2 weeks of no FUNL:(

I have been thinking of writing this for awhile, but have had a hard time getting my thoughts together enough to make sense of it all. I have been kind of emotional, and so I feel like some of it is really personal. Maybe I should write it in my journal, but lately I have kind of been using this as my journal, so here goes...

So on January 26th I was finally able to see the GI doctor here in Spokane (I made the appointment clear back at the beginning of October). I thought the appointment went really well. He was really nice an listened to everything I said. I guess there are other good doctors besides Dr. Smith. :) I had been doing pretty well for the most part. Besides the fact the I was having abdominal pain all the time. haha. It was different pain than I had ever had. It was not typical Crohn's/colitis pain. It wasn't crampy, it didn't get worse after I ate, and I didn't feel sick or nauseous. It was a sharp pain and definitely got worse with movement, such as rolling over in bed, sitting up from laying down, bending over, etc. I described this to Dr. Goodell and he thinks that I have something called costochondritis. It is a benign inflammation of the costal cartilage, which connects the rib to the sternum. He pushed right along my rib cage and it was pretty sore. No one knows the cause of it. He gave me a medication to help with it. I have been slowly increasing the dose over the last 4 weeks and it has helped a ton. I don't have the pain very often anymore. The medication also slows down the GI tract, which is a good side effect for me, because sometimes I feel like everything goes right through me and I don't absorb anything. Sometimes I would be worried that I was getting dehydrated. This medication has really helped that too. I hope it means that it will be easier for me to gain wt. We also talked about lots of other things. I wasn't able to really tell him exactly what they did during my surgery in Salt Lake, except that they removed the J-Pouch. I had had the records from the U of U sent to him, but he hadn't received them yet at the time of the appointment. From my understanding, and from my mom and Chris' understanding, they removed my j-pouch, but left what is called the rectal stump, meaning the last part of the intestine. I have no need for this anymore, but the surgeon talked to my mom and Chris during the surgery and said that if they removed it then, it would be pretty rough. Because I was already dealing with so much, so they decided to leave it in. He said it was possible that later I would have problems with it and may need another surgery to have it removed. I told this to Dr. Goodell and he acted like that was crazy. Hopefully it's just because I couldn't describe it well enough, and not because they really shouldn't have left anything there! I have read about people though, who have had the same thing, and had a later surgery to have it removed. He wants to do a scope to see exactly what is going on in there. He doesn't think that the costochondritis is causing all of my problems. I have also been dealing with a couple other things that worry me, and that he said should not be happening. It is probably TMI, so I will spare you the details. :) Even though my stomach has been much better with this new medication, I still have times where I don't feel well. It's hard to explain but I can be fine one minute, and the next minute I feel awful and just completely wiped out. I think part of that is my arthritis, too. I have been really anxious and nervous and wish I knew what those records from the U of U said. I am afraid of what he will find, or what he won't find. I am afraid of having to have another surgery, and I'm afraid of just having to keep living like I am, never knowing when I'm going to feel good or not. I guess I'm afraid of the unknown. 

We also discussed the debate that I may or may not actually have Crohn's disease. I have actually thought for quite awhile that I don't. The GI doctor in Salt Lake said that I did, because she did a scope and that is what she saw on the camera. But the surgeon in Salt Lake and the surgeon in Twin both said that my intestines looked healthy and that there was no sign of Crohn's. It is very likely that my problems were from my pouch, and the CMV. I really have a feeling that Dr. Goodell is not going to find any Crohn's or inflammation, and if we can figure out everything else, I will be fine. At least, I hope so. 

I also saw the Rheumatologist 2 weeks ago for a follow up visit to see if the new medicine she gave me was working. It wasn't really. My hands still swell up at night and feel like they are on fire. Some mornings (like this morning) it is so bad that my knuckles feel like they pop when I move my fingers. I have not been having any problems with my knees since I started that medicine, so actually it may have helped them. At the time, we decided to stop that medicine, though. She told me to let her know if my knees do get worse and we can restart it. I am continuing the plaquenil, which I have taken for two years. I don't know if it is helping, but she said it's best to keep taking it, because if you stop it and decide it was working, it usually doesn't work anymore when you restart it. We decided that since my hands are mainly my problem, (as opposed to other people who have problems with their hands, wrists, shoulders, hips, knees, feet, etc), that she would inject steroids directly into my knuckles. I wanted to try this before I tried something that was more systemic, like a shot I would give my self or an IV I would get every few weeks. She just did it in two of my fingers. I am supposed to see if it helps and call her if I want to do that with the rest of my fingers. Those two fingers have been so sore from the shot that it's been hard to tell, but today I can tell that they are not as swollen as the rest of my fingers. I am going to call her tomorrow and go back in to do the rest. 

Today I took a nap and woke up and my knees were swollen all of a sudden. I felt them and they were really warm. I had a hard time walking. I might have to start that other medicine again I guess. I wish I could get this under control. I can't sleep when my hands hurt so bad, and overall I feel tired and out of energy. I know it could be way worse, and could be affecting more than just my hands and knees, so I need to be more grateful that it is not.

I have had many days lately where I get really frustrated. I thought that after a year, I would have more answers. I didn't expect to be having problems and possibly be needing another surgery so soon. Now, I could be overreacting, maybe it's not as bad as I think. I know that I need to have faith in my Heavenly Father. I know that he knows me and has a plan for me. I have these trials for a reason. I know that He will not forsake us, He loves all of us and He loves me. I just need to remember this when I let myself worry too much. :) I am so thankful for my Savior. He knows exactly how I feel because he suffered for all of us. Not only for our sins, but He experienced every pain and emotion that we experience. 

One of my favorite scriptures is Doctrine and Covenants 121:7-8.
This is when Joseph Smith is in Liberty Jail, probably one of the lowest points of his life. Even though the Lord is speaking to Joseph, I feel like he is speaking to me every time I read it:

"My son, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment; And then if thou endure it well, God shall exalt thee on high; thou shalt triumph over all thy foes."

If you made it this far, then please watch the most recent Mormon Message. It is exactly what I needed to hear. I love President Eyering. 



I'm hoping that the next three weeks will bring knowledge, peace, and comfort. I am praying for faith to have the strength to handle whatever happens, and to climb this mountain.